Symptoms
of Eosinophilia-Myalgia Syndrome (EMS)
Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently in the acute stage, though not in all persons. Also, it's possible other symptoms appeared in some persons at this point in the disease not listed here. I am not an expert. Please see references at end.
Eosinophilia (elevated levels of eosinophils, a type of white blood
cell; sometimes was not tested, so was missed; may be possible that some persons
got EMS but did not have eosinophilia)
Myalgia (muscle pain)
Swelling (edema) of the face or extremities or other areas of the body, such
as the arms
Weight changes (gain followed by loss; or just loss; or perhaps just gain)
Hair loss (scalp and body hair; tended to grow back later though not always
a complete return to normal)
Nodules under the skin (in some persons at this stage)
Low-grade fever (although some had higher fevers) and Malaise
Joint pain (mainly the large joints)
Skin rashes of various types (wide variety of types - see articles)
Skin changes (often similar to those found in Eosinophilic Fasciitis); thickening;
scleroderma-like changes)
Lung problems (pulmonary hypertension; infiltrates in lungs; pneumonias; shortness
of breath; cough; chest pain/tightness)
Neurological problems (numbness; tingling; burning sensations; shock-like
sensations; headaches)
Cardiac abnormalities (heartbeat irregularities; more serious irregularities
or disease in a few; etc.)
GI (gastro-intestinal) problems (nausea; upset stomach; acid reflux; etc.)
Abnormal Lab Tests (abnormal lab tests in some persons such as: elevated Aldolase;
Leukocytosis; elevated Serum IgE; elevated Creatinine Kinase; elevated Erythrocyte
Sedimentation Rate (ESR); abnormal Liver Function tests; possible abnormal Antinuclear
Antibody test, in addition to Eosinophil count, etc.)
Other
Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently after the initial or onset stage, though not in all persons. Also, it's possible other symptoms appeared in some persons at this point in the disease not listed here. I am not an expert. Please see references at end.
Myalgia (muscle pain continued while eosinophilia usually decreased or returned
to normal within 6 months or more)
Muscle cramps (spasms) of legs, feet, abdomen and other parts of the body
(sometimes developed in onset phase)
Muscle weakness (became more apparent as time went on)
Numbness and other sensory/neurological abnormalities (continued from onset,
some quite severe such as ascending paralysis or polyneuropathy which if it
reached the diaphragm area could result in death due to paralysis of the breathing
muscles; in some this severe complication took time, and in others it may have progressed
quite rapidly - some persons became quadriplegics or partially paralyzed - of those
some died in the first months and years - or later - and some have survived though
perhaps have never been able to walk)
Cognitive changes began to appear (difficulty concentrating, finding words;
short-term memory loss; etc.)
Joint pain (often continued from onset stage)
Fatigue became quite pronounced (profound) in many with EMS at this time,
if not earlier
Skin changes (continued in many from onset stage, such as scleroderma-like
changes)
Cough and other pulmonary symptoms (continued into next stage after onset
in many persons; more serious or rare pulmonary complications included pulmonary
hypertension; severe damage requiring a wait for a lung transplant; life-threatening
pneumonias; embolisms; etc.)
Depression and/or anxiety (caused by having a chronic illness, though some
may have had pre-existing conditions)
Cardiac complications (cardiomyopathy in rare instances; other heart
problems)
Visual changes (dry eyes; tearing; loss of vision; other more serious conditions)
Migraines/headaches (continued - or developed for first time in some)
GI problems (continued in many or developed, such as acid reflux disease;
trouble swallowing; esophagus problems, etc.)
Hearing changes (reported by some, such as tinnitus or ear ringing)
Facial pain/Other pain (reported in some - such as TMJ-like disorders
or rarely: trigeminal neuralgia; etc.)
Other (such as a few continuing abnormal lab tests)
Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently after the acute and intermediate phases, though not in all persons. Also, it's possible other symptoms or secondary conditions have appeared in some persons at this point in the disease not listed here. As well, some of these diagnoses may have occurred earlier than 18 months in some persons. I am not an expert. Please see references at end.
Fibromyalgia (a condition with Tender Points and other symptoms)
Chronic Fatigue Syndrome (sometimes called CFIDS)
Both FM and CFIDS (some diagnosed with both)
Hypothyroidism (low thyroid function)
More pronounced Cognitive Dysfunction (neuro-cognitive dysfunction)
Sensitivity to odors, chemicals, etc. (may have developed earlier in some;
Multiple Chemical Sensitivity)
Dry Eye Syndrome (generally well-established in many by this time; dry mouth)
Sjogren's Syndrome (autoimmune disease secondary to EMS involving dry eyes
and many other symptoms)
Menstrual or Reproductive Problems (various disorders and urinary problems)
Emerging Dental Disorders (pain in gums; loose teeth; gum loss; infections;
autoimmune-like changes)
Psychiatric Disorders (depression; anxiety of various types including panic
disorder and post traumatic stress; other)
Myofascial Pain Syndrome (or sometimes now called Chronic Myofascial Pain
or CMP; Trigger Point pain)
TMJ; TMD-type disorders of face and jaws
Fairly high incidence of Diabetes (type 2) (but by no means suggesting
it's an expected EMS-related development)
A tendency to higher cholesterol levels or difficulty in lowering with diet
(but by no means definitely EMS-related)
Cardiac disorders (of various types; also high blood pressure; strokes; etc -
hard to know how much EMS has played into accelerating development of these disorders,
but undoubtedly in some persons it has played role by virtue of poor diet, inactivity
due to illness, fibrosis, elevated sugar levels, diabetes, etc.)
Gastro-Esophageal Reflux Disease; Swallowing problems; Esophagus pain or problems;
Lower GI problems
Pulmonary Diseases/Disorders (problems with breathing; pneumonias; asthma;
recurrent bronchitis, etc.)
Fatty Tumors; Desmoid tumors (benign and rare in those with EMS); one
or two cases of unusual cancerous tumors
Scleroderma-type skin disease; some actual scleroderma diagnoses (relatively
few but total not known); scleroderma skin changes are by no means found in all with
EMS - maybe 1/4 or 1/3 have it to some degree; tight skin)
Liver disorders (rarely - but autoimmune liver disease has been reported as
well as some other liver conditions)
Gall Bladder Disease (believed to be a slightly greater incidence; a few cases
on record of eosinophils in gall bladder)
Vision Problems (tearing; red eyes; problems with reading or watching TV;
changed vision; optic neuritis; etc.)
Other (EMS is diverse so there could be many other things some
have related to having had EMS)Please remember that many persons with EMS have relatively few complaints today and live full lives without much pain. Some are in remission or have few symptoms of EMS. A few believe they are actually cured or free of EMS. But many (we don't know what percentage) continue to suffer from at least several problems or secondary conditions to EMS involving usually several body systems. Treatment is by symptoms, and what works for one does not necessarily work for another. Always consult your own physician for advice. Please do not read the above list of possible complications and assume you will have - for instance - gall bladder disease related to having had EMS - it has been associated with EMS in some cases only.